Am I a medical mystery?

[medicalmysterymachine]

For years I thought everyone felt like this... and now I realise they don't!

If I skip lunch or eat low carb (e.g. an omelette or bowl of soup), I feel not just hungry but shaky. I can physically shake - my hands will tremble. I feel vaguely nauseous and very ill-tempered. (The ill-temper I think is normal for hunger.) I feel that I need to have carbs and will reach for e.g. crisps, crackers, toast as a quick fix. I assumed this was the "low blood sugar" people talk about, but a quick fix like a can of Coke or a handful of sweets doesn't put me right. It has to be something bready, potatoey or sort of heavy-carby.

Additionally, I get this feeling sometimes even when I have eaten a normal carby meal, and then I know a migraine is on its way. It's not an aura exactly, but when I feel that weird, hungry/shaky/sick feeling even after a decent meal, I know that I'll be getting a migraine later. I can't treat the migraine yet, as my migraine meds only work once the pain has kicked in.

I've been like this for as long as I can remember, so I don't think it's anything acute.

I had my cholesterol measured recently (high side of normal) and they did a diabetes test at the same time, which came back normal too. My BMI is 21, so I'm not overweight (though am perhaps a couple of kilos heavier than is ideal for my body). I'm 43.

I've Googled but can't find anything that fits. I guess if anything, it's a decent excuse to eat chips? Medical necessity?

Yep, this is me.

I have all kinds of shit wrong with me though - up to 7 diagnoses now.

Asthma
Endometriosis
Ibs
Complex regional pain syndrome
Anxiety
Functional neurological disorder
Peripheral neuropathy

Take your pick. A couple of them basically have symptoms of anything and everything.

Wow !!
I have complex regional pain syndrome ontop of other diagnosis and mine was caused by medical negligence . It's not a condition that all these symptoms fit and it's also a condition that mostly affects the extremities - hands , arms, legs and feet. It is also really rare and uncommon so please don't lump it in to the same group as IBS or Endo

I get the same OP, but I have a shortened digestive system, one third stomach and most of oesophagus removed.
The need to eat something carb heavy I get shakey is overpowering.

I wonder if it isn't still hypoglycemia. MIL is a type 1 diabetic and she almost always reaches for bread/something starchy to help raise her blood sugar rather than something sugary (unless there aren't other options). I think it's to do with the slower vs faster release carbs. Maybe for some reason the slower releasing carbs in bread/potatoes work better for you?

That said, I wonder if it is something migraine related. Dh often needs to eat something carby (though usually it's more sugary, not bread) when he is getting a migraine. He goes really weird, like can't speak, only word salad comes out and he needs to sit down and eat and drink something.

I think this is normal? I would feel like this if I skipped a meal

I get wobbly even without skipping meals. I can have breakfast, toast and cereal at 7am then my lunch break is 11.30-12.30 and afterwards my legs sometimes feel empty if that makes sense.

You sound exactly like me! I went on like that for years before eventually reaching a point of passing out regularly. I was eventually diagnosed with hypoglycemia by the endocrinologist. No diabetes etc... just hypoglycemia. No idea what has caused the hypoglycemia. I was refered by endocrinologist for as test on my adrenal gland function as this can apparently cause it? Anyway that came back borderline so I was discharged and left to it with a leaflet from the dietician.

Oh, and if its happens to be what I have, I was advised to avoid sugar as a fix. Only time that was recommended to me was if I had passed out, then it would be a quick swig of lucozade then load up on some lo gi foods.
Sugar as a fix just makes your blood sugar peak quickly then crash just a quick if you have hypoglycemia.

Real hypoglycaemia (measured with a blood test/glucose meter) has a number of possible causes. The first thing to do is find out whether you are really hypo when you feel shaky. Undiagnosed diabetes does not cause hypos, on the contrary, people with undiagnosed diabetes have high blood sugar.

Rarely, real hypos can be caused by a neuroendocrine tumour (almost always benign) called an insulinoma.

@Purpleraiin This is really interesting, thank you. It does fit most of the symptoms of hypoglycaemia, but I have zero other symptoms of diabetes, so was a bit stumped. Also as I've pretty much always been like this, I thought everyone was.

I'd watch survival shows on TV where they might go 3 days without food and be thinking, "Well, how come none of them are shaking?"

Bearing in mind it's an inconvenience which can largely be avoided by eating carbs, do we think it's worth bothering the doctor about?

@WiseUpJanetWeiss This is also really interesting. Do you think a doctor would fit me with a blood sugar monitor based on what I've said? It feels unlikely (obviously don't want to tempt fate) to be a tumour growing as I don't feel it's progressed in the last few years.

It's not just a case of feeling shaky - my hands will literally be trembling so much it's hard to get food out of packets etc.

My close friend has Reactive Hypoglycaemia and this sounds very similar.
She felt the need to eat carbs or something sweet or she'd get like you but, having been tested and diagnosed, she now knows she needs more protein and less carbs.
When she has too many carbs her blood glucose spikes (high blood sugar so body produces extra insulin) and then drops (low blood sugar coz body has produced too much insulin to control that spike) but when she has more protein, they are level and she doesn't get those spikes and drops. May be worth asking for a referral to an endocrinologist?
There's no cure and she's controlling it with diet and the help of a dietitian.

Also, hypoglycaemia on its own has nothing to do with diabetes - diabetes is when your body doesn't produce insulin so your blood sugars run high.
Obviously diabetics do have hypo's when they inject too much insulin/don't eat enough whilst taking their insulin.
I'm no expert but I have 20 years of caring for someone with Type 1 diabetes and a couple of years of my friend having Reactive Hypoglycaemia.

Have you ever tried eating protein for breakfast? Just protein. I used to have the same symptoms as you until I switched to a protein breakfast.

Almost 100% sure they won’t. My friend was diagnosed after first given a fasting blood test, and many other confirmatory tests. Even then he had to buy his own glucose meter (fairly cheap from Superdrug/Amazon fortunately) which he no longer needs post-surgery. His symptoms were completely debilitating so surgery was really the only option.

Reactive hypoglycaemia as described above is a more likely cause, fortunately.

Look up dysglycaemia @medicalmysterymachine

Yep, used to happen to me. Felt exactly how I imagined a low blood sugar thing would feel despite testing negative for diabetes over several years. Very shaky, knew instinctively I had to eat, tears, weird panic, almost collapsing.

I don't get them anymore but I have slowly reduced my bread and sugar intake, very rarely manage a loaf of bread a week, but still eat potatoes and rice.

Yep, same here I'm also collecting an untidy pile of diagnoses, but was like this while I was younger, fit and healthy. I have PCOS, no diabetes. It's a poorly-understood metabolic syndrome; I've vaguely thought it might be connected but who knows? Biscuits for the win!

You won't have any symptoms of diabetes, it's absolutely nothing at all to do with diabetes, although it was once described to me as the opposite if diabetes.
GP wise they can't really do alot. You can be sent for a blood test to rule diabetes out which is what I had to begin with, and it was ruled out. I was then refered to the endocrinologist by the GP and told to buy a blood sugar monitor, and keep a daily diary of my levels until I saw the endo. Endo picked up on it straight away but there is nothing that could be done other than diet control.
I would definetly go and see your GP and ask for a referal though. I probably went from early teens til mid 20s feeling like you before It got worse and I started passing out. I was ignored for a long time and was in A&E weekly for glucose drips after passing out yet again. Luckily someone was always around when I passed out, it can be very dangerous and evan fatal if it reaches that point and noone is there to help you.

I find it a huge inconvenience to be honest. I struggle alot with lo gi food as I don't actually like most of it! I also have to adjust what I eat based on the temperature and what I plan to do that day 🙄 if its hot, If I'm going on a walk with the dog, if I just want to mow the bloody lawn, I have to have regular rests and snack little and often or I'm shaky the minute I get a bit warm. In the winter if I'm out for a walk with a big coat on, my pockets are stuffed with snacks because again the minute I start to warm up on the walk I'm dizzy and shaky but it's to cold to take my coat off and cool down, I can't win!

@Purpleraiin Are you actually hypo when you feel hypo, and if so how hypo? Have you had the test for insulinoma (72 hour fast in hospital)?

(Sorry for hijacking).

I'm the same. The way it was described to me is that if I eat something sugary or carb heavy my body overproduces insulin which sends my blood sugar low and leaves me feeling terrible so I reach for the carbs to "fix" it. The way forward it is eat low GL so you don't prompt that insulin response.

It can be linked to PCOS which some researchers think is a metabolic disorder rather than a gynae one. (I notice another poster mentioned PCOS.)

Sound alike blood sugar regulation issue.
There are lots of different reasons for blood sugar not to be regulated well
Worth buying a monitor to check it
Under 2.8 in a non diabetic person is concetning

If I cut carbs, I am really unwell. Dizzy, can’t see properly, starving. Even if I then eat carbs, it takes me a good day to feel normal again. I discovered this when trying the fast 800 on a few occasions and now will absolutely never quit carbs! Besides, I like them, and also I’m a healthy weight.